Christmas 2022

We're here, we're home. 

Home for the holidays (mostly).

I feel like I missed December, pretty much did.  

We put up the tree the day after Thanksgiving (of course!) and were admitted the next Wednesday, only five days later.

Came home on the 21st, so just 4 days before Christmas. 

Yep, missed most of that.  Missed making cinnamon roll bread for teachers and neighbors.  Missed the nightly advent stories and songs.  Missed the music and church services. 

But we didn't miss Aaron.  He's here.  Another Christmas with him here with us.  

As I walked the halls at Primary's, I looked around at those who were also there. The ones clinging to hope, the ones who were trying to find hope.  And the ones for whom hope was fading. 

It's a bittersweet experience being at the hospital during the holidays.  Staff know it's hard and they try to empathize.  Community rallies and donations literally pour in:  stuffed animals, blankets, toys, meals.  But still, you're there, where you'd rather not be.  At the same time, you're there with your child, who is still living, when many are not. 

I sat with a family as they lost a child.  My own frustrations and worries faded as I held Mom. I don't think I said much.  What could be said? Nothing would make it better.  My own heart ached so much for them.  

Aaron came home with me. Their child did not go home with them. 

Christmas here was a bit different.  We got up and had breakfast, and then Jonny and Avanlee called with Elend from Germany where they were enjoying Christmas. After that, it was time for those going to church to get ready.  When they got home, Andrew called from Arizona.  I treasure these video connections.  It makes missing them here a bit easier.  Then, finally, we got to the presents.  In the past, breakfast has promptly been followed by presents, and waiting until 7:00 has been torture for me.  My husband kept trying to figure out what had been done with his wife and who I was in her place.  But this year, this year I wanted to savor the experiences, and it was beautiful.  Even sweet three-year-old Linnaea was so incredibly patient and engaged, more so than I think I was when I was ten times her age.

As I've contemplated Christmas this year, I'm drawn back to the first Christmas.  There weren't a lot of lights and clamor and presents.  There certainly weren't treats and parties. I think of Mary holding sweet Jesus.  She knew, and yet she didn't know.  She couldn't have.  He was still with her, tiny, helpless, in her arms.  She was warned by Simeon that it would be as if a sword through her own soul.  Yet, she didn't falter. She loved and she taught, protected and served. Her gentle soul sought God's will for His son.  

So I guess, in the true spirit of Christmas, we didn't miss anything. We have family and love and everything we need. Aaron is (very slowly) starting to improve.  He's still tired, oh so very tired. His feedings are progressing much slower than I'd like them to. He's still fevering, but it's low grade (100.4-100.9).  He has an eye appointment tomorrow morning to check on the infection that has plagued him for several months now but flared even more during our most recent stay.  It's hard for him right now. I am hopeful that things will improve and his spunky spirit will return. 

But in the end, regardless, he is ours. Our son. And we've had another year where Tiny Tim's crutch is still needed, still used, still loved.  God bless us, every one. 

"...It might be pleasant to them to remember upon Christmas Day, 

who made lame beggars walk, and blind men see." 

— Bob Cratchit

Home Again, Home Again, Jiggity Jig

Okay, maybe not as fast as jiggity jig.

In fact, we've been here three weeks today, total of 22 days, a tie for our longest stay.

BUT we're heading home.  Need one final consult with ENT and an oxygen tank and we'll be gone.

So grateful to be home for Christmas, just to be home regardless of the season.  

He is still so very tired.  I'm hoping we see him perk up once he's back with family.  He still needs continuous feeds. I'll work him back to baseline at home.  But he no longer needs IV antibiotics or fluids. He's way down on his oxygen and his vitals haven't looked this good for WEEKS!  Like just after his last surgery where we fixed the hole between his femoral vein and artery.  No fever for the past 24+ hours. 

It's time.

Yay for home, for family, for Christmas.  

I'm so grateful to be taking him home.  Stays like this make a mama's heart and head go places they shouldn't.  We are so thankful for his continued presence with us this side of heaven.  It's a gift I don't think I will ever take for granted.  A precious gift denied to many others.  I don't know why some stay and some don't.  They are no less loved and cared for.  And missed.

“What is Christmas? It is tenderness for the past, 

courage for the present, hope for the future.” 

– Agnes M. Pahro

Stutter Steps

You know that movie, Groundhog Day?  Where the day just keeps starting over again?  Bill Murray can't quite figure out how to get out of the loop?  Yeah....

I did put up a Facebook post a couple days ago but honestly, recapping that wouldn't give any new info.  I mean, Groundhog Day. 

We start his feeds slow, work our way up sloooowly, and then hit a roadblock.  Usually it's a spiking fever, higher heart rate, lower sats, or a combination of the three.  Plus his girth goes up substantially. Yeah, they measure his tummy pretty often.  So then we have to stop giving him anything through his g-tube.  

Over and over and over again.

What we know: his white blood count (infection fighting blood cells) trend up when he struggles. He fevers, sometimes as high as 104.7 (YIKES!). He gets more tired. His red blood cells, his hemoglobin (part of the red blood cells that carries oxygen) and hematocrit (percentage of red blood cells available) have all been trending downward.  Interesting and maybe pertinent, his thyroid levels are actually high instead of low or normal like usual.  And he's not tolerating food in his belly/intestines/gut/whatever.

So after being pretty sure we've knocked out whatever bad bacteria there is with two weeks of big gun IV antibiotics, and trying most everything else, he's now getting blood.  His cardio really likes all those red blood cell markers to not just be in the normal range, but at the upper end because of his heart issues.  Somewhat of concern is that vitals wise, he's looked pretty good so we didn't want to upset the hemodynamic balance.  The conclusion we all reached together is that at this point, the possible benefit outweighs the risks.  

So here's hoping that bag is a bunch of red pixie dust running into his veins.  He's responded well to it in the past.  And right now he's already looking a little more pink.  

Maybe we've found our magic ticket out of our loop?

When the world says, "Give up," Hope whispers, "Try it one more time." 

~Author unknown

Still Got Work To Do

Still here. 

Still trying.

Still struggling a bit.

He is reaching his 24 hour feeding goal, but we're just getting there.  It's kinda been fits and starts.  Next will be to try to condense it down to daytime feeding and then individual meals. 

He finished his week of IV antibiotics on Wednesday.  Thursday his body, or at least the bacteria, said, "wait, I'm not done.  I'm still here and kicking."

We discovered that on Thursday evening, night, and early Friday morning.  

You know how when you do (I don't do) cardio exercises the goal is to get your heart rate up?  Um, not supposed to happen when sleeping.  He was at 120's in the evening, progressed to about 150 beats per minute at midnight, and then at 1:30 am he decided to go all out and hit 170.  Asleep.  Not so great.

So once again, a rapid responses was sent out.  Fortunately this time, the team came up, evaluated him, pulled labs and did x-rays, and decided he didn't need to make the trek downstairs.  They did restart IV antibiotics again and we pulled more cultures.

So now his ear, his eye, and probably his trachea are all infected and they figure he needs another week.  We even did a CT scan to get a really good look at his ears, and yep, still got "stuff" in there.  Our new discharge goal is for Saturday.  

In the meantime, he's tired, so tired.  Labs also showed that his hemoglobin and hematocrit are both pretty low.  They were on the low end of normal when we were admitted but they've dropped quite a bit since then.  So we're having the discussion about whether to start iron or transfuse, or what.  Hemodynamically (blood volume, profusion, blood pressures, oxygenation) he's looking pretty good so there's concern about upsetting the apple cart by putting more volume in.  But at the same time, his bone marrow isn't currently putting out the cells it's supposed to be.  

Which, incidentally, can influence the gut response.  Remember the old gospel song, "Dem Bones"?  Yeah, it's all interconnected.  Ear, eye, and trachea.  Blood, oxygen levels and everything.  Sigh...

So anyway, that's where we are.   

On another note, I'm done with finals and have a few more hours I need to put in at my internship this week.  Then I have a break before next semester comes at me.  Last one!  

In the meantime, we'll just keep on working on getting things sorted out. 

"Every noble work is at first impossible."

Thomas Carlyle

Movin' On Up

He got out of the PICU today.

He's spent most of his time since Saturday afternoon asleep.  But it's been a good sleep, a healing sleep.  Yesterday his heart rate and respiratory rates were still a bit high, but today they're down where they should be.  

His gut continues to move along the way it should, and tonight his girth measured about 64 cm.  That's down from the 77 cm at the worst of things.  Yeah, he was that big and swollen.

So tomorrow we'll start introducing formula again, very slowly. 

He's still got a ways to go before we get out of h
ere.  Right now the thinking is that he needs to be back to full feeds and hydration for a couple days, to make sure he keeps on the right path, before we make it home.  

So here's to boring days, full of not much and just working on feeling better.

Fingers crossed....  

It's no coincidence that four of the six letters in health are "heal." 

~Terri Guillemets

Silent Night, Peaceful Night

Quiet.  

Rest.

Peace.

Yesterday was rough again.  Lots of pain, fevers, agitation.  Then another big stool.

And he slept.  And slept.  And didn't wake until after 2 pm.

He's not grimacing, or crying, or trying to get comfortable.

It was more like a "totally exhausted, I finally don't hurt, my body needs to heal" sleep.

Not quite a silent night.  We did have vitals checks and meds to do.  

But yes, a very peaceful night.

..sleep, Heaven's gift to all its creatures... 

~Charles Dickens 

Activity at 2 AM is Never Good.

What is it with 2 am?  This isn't first time I've woke up to a full room at 2 am.

I don't know what happened.  

The team doesn't really either.

But I woke up with all the lights on and a room full of people. 

Aaron had dropped his sats precipitously.  

Like into the 50's. 

No bueno.

And he wasn't too interested in recovering.

So when I woke, the whole rapid response team was there.  Apparently he'd dropped, they were bagging.  It wasn't working.  Like he was on 100% oxygen through the bag and he really didn't want to come out of the low 60's.  

I don't know how many people were in the room, but it was a lot!  They didn't want to try to move him until the attending was also present.  I don't think they usually come up for rapid responses, but she came, too.  They gave Ativan through his IV with epinephrine on standby in case his blood pressures tanked.  I was asked about compressions, and responded automatically that he was "full code."  I wasn't processing, and didn't want to either.  

We made it downstairs, and they moved fast once they started moving the bed.  In the middle of this whole mess, he created a mess in his diaper (and everywhere else, TMI?).  Honestly, it was his first stool on his own for a week, and the first one he'd had here.

Prior to all of this going down, we'd tried to run Pedialyte really slow (10ml/hr) overnight Thursday to Friday to wake up his bowels, but he didn't like that so it was stopped Friday morning.  He usually loves vest treatment, but didn't tolerate it at all during the day, so that was stopped after just a few minutes each time and then put on hold after two failures.  

This poor kid.  His belly really HURTS!!  He's had another BM today, but he's spiking another fever and he's crying most of the time.  

He has come down on his oxygen needs.  He was on 100% on the ICU vent when he was finally stabilized, and now he's on 65%.  That's progress.  But he's still requiring IV Tylenol and Ativan to be comfortable.

Friday afternoon, big brother Michael was
up here and put his BYU hat on this Utes fan. 
Aaron wasn't quite sure he approved.

Yesterday in my advanced therapy class, we had to conduct a (short) clinical session in front of the class.  Because you have to have a client, we were each other's guinea pigs.  My partner asked me if we could keep things "real."  In other words, not role play.  She did with her issues and I think it went okay.  Between her request and some comments that had been made in Addictions about honesty and trust, I decided to be open about what I'm dealing with.  I think I've felt the need to protect others.  I feel like I'm too scary, this is too hard, and I don't want to burden others.  In Addictions, we talked about how the client has to be able to trust the therapist to deal with the horrific things that they deal with in order to heal.  So, yeah...  

Anyway, after unloading on K, she asked me what I wanted to do with the (very few) minutes we had left.  Did I want to work on come skills to get through things, or explore the emotions? I quipped that the skills were probably easier, but the emotions were more needed, so she walked me through some somatic exercises.  

We talked about what I was feeling, where it was, how it felt, looked, and just let it "be."  This big black knobby mass that sits in my own chest, on my lungs.  And then she asked what it was saying to me.  As I pondered that, I started crying (I'm tearing up just remembering).  I've said this to so many, but I try to stay busy and push it away myself.

"It's okay to not be okay."  

That's it.  It's okay to not be okay.  And I sat with it.  

I needed this so badly, and it was before all the crap hit the fan last night.  

Linnaea sat on my lap for my livestream class yesterday, waving at all my other classmates on the screen.  

"Those are all your friends, Gramma!"  

Yes, Linnaea, they are my friends.  And I am so grateful for them.  They help me know myself and give me strength.  

One's friends are that part of the human race with which one can be human. 

~George Santayana